Dig Deeper

Last week I mentioned that I am reading a book titled, “Uniquely Human, A Different Way of Seeing Autism”, by Barry M. Prizant, PhD. I highly recommend this book for anyone that might want to learn more about autism. I think that it should be required reading for anyone that is planning in some way to work with individuals on the autism spectrum.

I think I also mentioned that I felt like he was writing our story. Which reminds me that there are many other families raising children and supporting adults with needs similar to Travis’s needs. Prizant says that he has worked with thousands of families touched by autism for over forty years. I remember thinking several times over the years that I wish there was more help out there for families. Professionals have learned so much since we were fighting with our district. But then I read that Prizant has been consulting for school districts for several years. At least some of the information he shares was available when Travis was a student.

The reason I believe that this book is an important read is because I encounter families regularly in the Facebook groups I belong to for parents of high functioning autists that even today are fighting their districts to get appropriate accommodations in place at school. Professionals might have learned so much since Travis was a young child in school, but it seems like many still have room to grow.

I am going to quote from his book quite a bit today. Prizant’s writing is so easy to understand and makes so much sense.

In his very first chapter he writes about an eight-year-old boy. The administrators in his school district called him the worst behavioral problem that they had ever encountered. Prizant writes, “Reports from his school described kicking, scratching, and biting episodes escalating into fits so severe that the adults had to pin the boy down to subdue him and then isolate him in a “time-out” room.”

If you’ve been following our story you may remember that this accurately describes Travis at this age. He would be restrained and then brought to the “quiet room”. I detail this in my blog titled, “The Quiet Room”.

Prizant says, “The staff had interpreted all of this as willful, uncooperative behavior. Clearly, they insisted, the boy was displaying noncompliant behavior. In their eyes he was strong-willed, stubborn, and defiant, and their response was to try to break him — to treat him as a trainer would treat a horse.”

Just an aside, my friends that have horses actually treat them better than this, even while training.

This boy’s mother shared with the district that her son’s actions were his way of communicating, that he had sensory challenges, but the school staff dismissed her. Sounds familiar. Again, I realize that I am not alone. I wrote in my blog titled, “We are the Experts” how our school district dismissed my input by suggesting that I needed to agree to their assessment of Travis because they were the experts. I had to remind the district that if they were the experts they would have Travis’s behavior challenges figured out. Right?

Prizant asks, “What did these educators offer to help this boy learn to communicate? Practically nothing. The district’s policy was to focus first on controlling a child’s behavior, and, only after achieving success, to address the area of communication.”

Prizant goes on to say, “They had it all wrong. What I saw was a boy who was understandably frightened, anxious, and constantly on guard. And I saw something else: his extreme vigilance and anxiety were manifestations of the inevitable damage that occurs when people — however well meaning — completely misunderstand the behavior of individuals with autism.

Instead of seeking to understand the child’s perspective and experience, they simply try to manage the behavior.”

Inevitable damage. My eyes are tearing up. Because I wonder how much of what Travis is feeling and living with today might be as a result of years of professionals getting it wrong. Years of restraints. Quiet rooms. Sounds like a nice room to gather yourself. Turns out in Travis’s school it was really a room with four cement walls and a cement floor and nothing else.

Prizant details that individuals on the autism spectrum are diagnosed using a checklist of deficits. He says, “We say a child has autism if he displays a combination of traits and behaviors that are deemed to be problematic: difficulty in communicating, trouble developing relationships, a restricted repertoire of interests and behaviors. Following this approach means defining a child as the sum of his deficits.

How best to help a child? By managing those behaviors or attempt to get rid of them. And what denotes success? The more we make a child look and act normal, the better.

This way of understanding and supporting people with autism is sorely lacking. It treats the person as a problem to be solved rather than an individual to be understood. It fails to show respect for the individual and ignores that person’s perspective and experience. It neglects the importance of listening, paying close attention to what the person is telling us, whether through speech or patterns of behavior.”

It is Prizant’s belief that not only does this approach not work, but it makes things worse. It is important to dig deeper to find out what is motivating these behaviors. Ask the question, why?

According to Prizant, the answer is usually that the person is experiencing some degree of emotional dysregulation. Prizant states, “People with autism, primarily due to underlying neurology (the way the brain’s wiring works), are unusually vulnerable to everyday emotional and physiological challenges. So they experience more feelings of discomfort, anxiety, and confusion than others. They also have more difficulty learning how to cope with these feelings and challenges.

To be clear: Difficulty staying well regulated emotionally and physiologically should be a core, defining feature of autism. Unfortunately professionals have long overlooked this, focusing on the resulting behaviors instead of the underlying causes.

If you know a person with autism, consider what makes this person less able to stay well regulated: problems in communicating, environments that are chaotic, people who are confusing because they talk or move too quickly, unexpected change, excessive worry about things that are uncertain. Then there are associated challenges, such as sensory sensitivities to touch and sound, motor and movement disturbances, sleep deprivation, allergies and gastrointestinal issues.

In addition many people with autism are innately unaware of how others might interpret their actions when they are dysregulated.”

Prizant shares that if a child is refusing to go in to the cafeteria or gym, it could simply be that it is too loud. The teacher assumes that it is willful disobedience. If the child tries to escape, it’s possible that the child can’t bear the volume or quality of the noise or the chaos of the setting. The behavior is a strategy to feel better regulated emotionally.

Wow. That about sums Travis and our experiences up in a nutshell.

I wrote last week that I was learning about things that I could tweak about how I respond to Travis that could help our relationship. I’ve shared in the past that I am Travis’s kicking post. What I mean by this is that if things are not going right for him he takes it out on me. This happens a lot. I’ve also shared that he calls me on average, nine times a day. I detail this in my blog titled, “Nine Times a Day”.

Prizant says that many individuals on the autism spectrum use people to regulate. The presence and proximity of another human being is the key to emotional regulation. This makes better sense to me now. I have said that I feel like sometimes when he calls it’s because he needs to just touch me. He needs to make sure that I am there. But unfortunately, oftentimes when he calls, he is in the middle of a situation. Most times I am able to talk him through it, but sometimes not.

Now I am beginning to understand the need to speak to me so often throughout the day. He is using me to help him with his emotional regulation. The problem is that it helps him, but ends up exhausting me emotionally. His rougher days suck the energy right out of me.

Prizant says that people can cause dysregulation in individuals with autism. He says that parents can cause dysregulation even when acting with the best intentions. Some examples that he gives are asking our child to stay in a noisy or challenging social activity for just five more minutes. Or when we ask our child to complete just two more math problems. But that is all it takes to send them over the edge.

He says that one of the most important things that parents can do is to acknowledge and validate our child’s feelings of dysregulation. He also said that teachers and others frequently overlook this basic measure.

In the past I have said that I feel like I need to be the “Stepford” mother. I have to be emotionally stable or I could throw Travis off kilter.

Prizant says, “A parent or a teacher can make a difference, positive or negative, merely with tone of voice or energy level or by being predictable or surprising. Sometimes offering the best support means suppressing your instinctive reaction. Instead of trying to change how a person with autism reacts to us, we need to pay close attention to how we react to the person.”

Let me just say that I have to suppress my instinctive reaction often with Travis.

One of the things I really appreciate about Prizant is that he openly admits how much he has learned from parents. He states, “Many parents look to doctors or therapists to be the experts, appealing to them to explain their children. Over time I have come to realize that the best approaches to autism are those centered on family. Parents almost always know their children better than anyone else does. Professionals need to rely more on the insiders: parents, their children, and other family members.”

I can think of a few professionals in our story that I should send a copy of this book to.

I feel like I have done a pretty good job of trying to figure out how best to help my boy. I will continue doing my research. I will continue to dig deeper.

“You say you have tried everything. Dig deeper. You feel like there’s nothing left inside. Dig deeper. You’re getting ok results. Dig deeper. You may have achieved a lot in your life. Dig deeper.” - Author Unknown

Dig deep. Find that one reason that stops you from quitting.” - Author Unknown